“Our boy is not a project, he is to be loved”: Q&A on raising children with special needs
by Christine Leow // November 12, 2020, 3:08 pm
Raising 12-year-old Josiah who has austism and development delay has strengthened the Yuen family and their faith. The Yuens and another family shared their journeys with others during a recent Salt&Light Family Night. Photo from Tammy Yuen's Facebook.
Professional photographer Isabelle Lim, 26, was born with rare genetic disorder Nager Syndrome. It left her profoundly deaf and requiring multiple surgeries to correct facial and limb deformities that made it difficult for her to breathe and eat.
Nearly 100 participants logged onto Zoom chat show Salt&Light Family Night (November 10) to hear their stories and learn from their journeys. On the panel with Isabelle was her mum, Jacqueline Lim.
Of the participants, 60% were parents with children who had special needs.
The participants had plenty of questions on raising children with special needs.
Here are their questions and the answers.
How do you cope as parents?
“Find a friend or two to pray with,” said Tammy.
She met other mothers from Josiah’s school who were Christians. They formed a prayer and support group that was “a life line” for her.
“God rescued me during prayer. God showed me things that I wasn’t able to see in Josiah because I was in so much pain.
“Find a friend or two to pray with.”
“In order for me to even see how God was bringing breakthrough and healing in Josiah, I had to let God heal my own hurt first because pain is like a blindfold. It prevents you from seeing what is happening.”
As the hurts healed, it also brought “a shift” in Tammy. “It brought me to a place of rest from a place of striving and a place of distress.”
It was then that she was able to tap on God’s wisdom to manage her son. During prayer time, God gave her an image of what was happening inside her son if she spoke to him “in a loud, angry scolding tone”.
“Inside he was quivering. It appeared to be like a destablising force.
“It was causing him to be in shock. And he had to take time to recover from the loud tone and the words I used.”
God gave her an image of what was happening inside her son if she spoke to him in a scolding tone.
When Tammy softened her approach, she saw a miraculous transformation in Josiah. The tantrums decreased and, today, he is a “very sweet child”.
“He is a happy child. Everybody who knows him will agree with me. He is a very, very joyful boy. All his teachers love him. They find him so cute, so cheeky.”
He is also very bright. “Every other day, he surprises us with a glimpse of brilliance that is within him”. Josiah is a consummate puzzle-solver who can piece together a 1,000-piece puzzle faster than his parents can.
For the Lims, acceptance has been key to coping.
“We saw Isabelle very much like a regular child, just that she has some medical issue. She cannot breathe well, she cannot eat well, she cannot hear, she has fused elbows. But that aside, we saw her as a child first,” said Jacqueline.
So, they taught and nurtured her like they would any child.
“We saw Isabelle very much like a regular child just that she has some medical issues.”
“We talked to her, we carried her, we would sing to her even though she couldn’t hear our songs. So, we used a lot of facial expressions. We showed her love through our hugs, through our time and through our play.”
Isabelle was a happy, teachable and responsive child, which also made things easier. “We could see it in her eyes: Teach me more, I want to learn more.”
The Lims also relied on their support system. “When I need a short break, Isabelle could go to my sister-in-law for some play time.”
Friends rallied around them providing help, support and information on the little known Nager Syndrome. Medical staff gave Isabelle excellent care. Along the way, they had a very good domestic helper who worked for them for 12 years.
How do you build your capacity to love your child?
Jacqueline had prayed for a child before Isabelle came along,
“When we got her, who am I to say that she is not perfect. Because she is perfectly made in God’s eyes,” said Jacqueline.
For the Yuens, it is also God’s love that feeds their love for their child.
Said Tammy: “We love because He first loved us. I’ve learnt to be a good receiver of love. I feel that it is so important. I stopped trying to be a super woman and trying to handle everything perfectly. I do accept help in whatever way to be able to have time to receive from God His perspective.”
“The goal is to see him through God’s eyes.”
Added Rev Jeff: “I love him the way he is. That is not accepting defeat. If I try to love him for who he is going to be, I’m going to be disappointed every day.
“If you love him for what he is in the future, whatever you are going through with that person is suffering because you are looking for an end product and it is not happening.
“The goal is to see him through God’s eyes and just love him the way he is. And from that you learn to enjoy him.”
Josiah’s affections also fuel their love for him. Said Tammy: “God reveals so much through our son. I see the way Josiah loves Jeff and me even though sometimes we don’t have it all together and we mess up.
“But Josiah is the most forgiving person in the world. I see the way Josiah loves and I’m learning from him.”
How has raising a child with special needs affected your marriage?
Caring for Isabelle has brought the Lims closer. “I could never have raised a child with special needs alone,” said Jacqueline.
“We support each other at crossroads. Such as when we had to decide whether to let her go for a major operation (to correct her receded jaw) at the age of two.”
You have to intentionally create events for your family as memory stones, something to hold on to.”
The Yuens have always laboured side by side. They were missionaries in the years before Josiah came along. Even today, they lead church together.
“So, we are in a mission together and now Josiah is part of our mission team,” said Tammy.
Travelling together for speaking engagements abroad has made the family closer. Said Reverend Jeff: “Josiah has probably travelled more than any kid his age. He started having his passport stamped when he was two months old.
“It’s intentional. You have to create memory stones. When God did something, Israel always put a stone to help them remember. You have to intentionally create events for your family as memory stones, something to hold on to.”
How do you raise your children to be confident?
Jacqueline believes it begins with her mindset.
“God showed me many positive sides of Isabelle. She is very cheery, she is lovable, she returns your love, she is very joyful.
“I focus on these. I rather see what she is able (to do) rather than to see that she is unable.”
The Lims also “celebrate the little things”.
“The joy of our celebration gave him the strength to move on.”
“When you see your child signing Daddy or Mummy in return, it is like her voice calling you Daddy or Mummy. God has created her wonderfully and I try to see her through God’s eyes.”
The Yuens, too, celebrate Josiah’s achievements all the time. The first time he put together a four-piece puzzle, they cheered with claps. Now, every time he finishes a puzzle, he runs to his parents and smiles, and they cheer his effort.
“We celebrate the small. The joy of the Lord is our strength. The joy of our celebration gave him the strength to move on to the bigger puzzles. It would never have happened if we didn’t celebrate the small things.”
How has the church helped and how can the church continue to help?
The Lims were able to find a church– Wesley Methodist Church – that had a ministry to children with special needs . That allowed Isabelle to grow up with a Christian community.
“The church celebrated every milestone that I overcame and the prayer warriors also prayed for me,” said Isabelle.
At 16, she graduated from the Sunday School for those with special needs and moved to the Youth Ministry where she was the only deaf person. There, she had prayer buddies who supported her.
“Love is the greatest gift.”
The Yuens are leaders in a church that is not very large. It means that everyone knows Josiah.
“He can run up the stage and no usher will drag him down,” said Reverend Jeff.
What he does hope to see is “more education” in the church. Over the years, well-meaning people have come up to the family with advice on diets they think can help children who have autism.
“Sometimes, it’s discouraging because giving more advice is also telling you that you are not doing enough. The best thing for the parents is for you to be there to say: ‘Hey, we are with you. How can we serve?’
“Sometimes, what (parents of children with autism) need is someone to listen and stand with them. Love is the greatest gift.”
Of the hundreds who have come to pray for Josiah, Reverend Jeff said: “We pray, too. But the boy is not a project for you to discover what is wrong with him. The kid is to be loved.”
“I was a friend and a sister and a daughter even before I became mum to a child with special needs.”
Tammy affirms this: “Josiah feels very loved and very welcomed and accepted in church. His friends are all the adults and kids in church.
“(Because of that), we have a family of people in church who are helping to look out for him. It gives Jeff and me some respite.”
The Yuens also welcome practical help. People have sent them food, cooked for them and come alongside them in the sometimes “very lonely journey”. Friends would offer to accompany Tammy on her errands with Josiah so she can have someone to talk to.
“I was a friend and a sister and a daughter even before I became mum to a child with special needs. It is nice that people remember that and are willing to go the distance with me.”
How do you manage teasing or comments from others?
Josiah himself is not bothered by the remarks. “Josiah is very chill, he doesn’t care”.
But Tammy often steps in to turn teases and hurtful comments into opportunities to tell others about his condition.
Using the analogy of yet-to-be-developed super powers, she tries to help them understand that children with special needs “are very powerful in one area but there is another area which they are still growing in”.
Tammy often steps in to turn teases and hurtful comments into opportunities to educate.
Said Tammy: “It doesn’t make them bad. It just makes them different. All of us are capable. It’s just that you may not have realised (their capabilities).”
In the same way, when people ask why Isabelle only has four fingers on each hand, Jacqueline uses humour: “I tell them Mickey Mouse also has four fingers.”
When asked why her daughter cannot speak, she tells them that signing is a language, too, and that Isabelle merely “speaks” a different language.
Reverend Jeff also believes in making the home a safe and empowering place to fortify his son and counter the harshness of the world outside.
How do you manage children who resent their siblings with special needs?
The Lims have a son, Ian, who is five years younger than Isabelle. “When he complains sometimes that he doesn’t get enough of my attention, I explain that I need to give che che (older sister) more attention to help her be more independent so she doesn’t need to depend on him in the future.”
Though Josiah has no siblings, Tammy understands that such rivalry amongst children must stem from a deep need and is a cry for help. “Pray and ask God how to fill that need.”
Added Reverend Jeff: “We are not there to compete but to complete one another (in a family).”
Should we homeschool a child with autism?
“Autism is a spectrum so every child is different. They have different areas of challenge and things to focus on,” said Tammy.
So, there is no formula. In addition, not every parent may want to – or can – homeschool their child. Tammy chooses to champion Josiah’s needs and tap on others to teach him where she cannot.
Any parting words?
When asked to recommend a feeding therapist, Jacqueline suggested HeadStart for Life.
Tammy encouraged those present: “Parents, caregivers, you are the most powerful giveback to your children. God picked you. You are the best choice that God has selected for your child even though you may not feel like it.
“You are the best choice that God has selected for your child even though you may not feel like it.”
“The second thing is the importance of learning to see through God’s eyes. I was looking at things from the physical point of view and I was missing the treasure.
“God can show you things so you are able to see from a heavenly perspective. When you have that, your heart will be so lifted up. You will receive so much life.”
Added Isabelle: “Don’t worry about how the child will turn out when he or she grows up. God has a purpose for every child.”
Click here for Part 1 of the Lims and the Yuens sharing on Salt&Light Family Night.
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